Fluge & Mella's pre-trial study highlights life-changing potential of rituximab
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today...
Discuss the article on the Forums.

UK ME/CFS Research Collaborative September

Discussion in 'Upcoming ME/CFS Events' started by energyoverload, Jun 17, 2014.

  1. energyoverload

    energyoverload Senior Member

    Messages:
    128
    Likes:
    79
    London
    I was inspired today by the fact that a lot of the HHS and CFSAC committee events are broadcast via a live webstream. I think it really helps to make the whole research process a lot more transparent and empowers patients to be able to see what is being discussed.

    Does anyone find the webcasting to be useful with regards to making the decisions more transparent etc?
    If so I would like to get the UK ME/CFS Research Collaborative in September to be streamed via live web cast. Obviously so many patients cannot make this meeting. Moreover this meeting is largely funded via the MRC, therefore government and UK taxpayer.

    It is our right to see this. I am considering to start a petition..? What are your thoughts. It would certainly put a stop to all of this lack of patient involvement in research direction etc.
     
    golden, Leopardtail, Esther12 and 2 others like this.
  2. Sasha

    Sasha Fine, thank you

    Messages:
    11,101
    Likes:
    13,181
    UK
    Interesting idea. It might depend what's on the agenda - there's presumably a cost associated with livestreaming and not all meetings are appropriate for public broadcast.

    It might be worth approaching the MEA, for example, to get an idea of what the issues might be - they're represented on the collaborative.

    My concern would be that if you set up a petition without understanding the context of the meeting, it will be easy to dismiss it - but much harder if it's well-researched. And if the MEA are pro-livestreaming, putting that to the collaborative via them might be a more powerful way of getting a result.

    Just my thoughts.
     
  3. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    Morning,

    I think as you might gather from the programme for the patient's session or rather afternoon: HERE the hour that has been allotted to researchers making their presentations to patients is not really worth live broadcast. Indeed the emphasis of the patient participation is not really about that - as you can see - and despite it all now being free, I personally think it will be a hard sell.

    I still think the conference as a whole is a great idea - but I wanted and tried for greater patient access to the 'main event' i.e. the parts where researchers actually talk and present and discuss... But regretfully I was unsuccessful.

    I do think they have missed a trick and whilst there will be reporting (after the conference) I understand - I do feel this initial event will not live up to the high standards set elsewhere and should not perhaps be expected to.

    Much of what I know is available here: http://www.meassociation.org.uk/201...ember-thanks-to-the-medical-research-council/

    I'll try to find out where the information relating to the professional conference can be located - as the link in the above does not seem to be working and I can't find it in amongst all my other stuff at the present moment in time...

    Edit:

    I can't find the details because they haven't been finalised yet I don't believe i.e. they are still working out a programme. But I shall let you know as soon as it is published.
     
    Last edited: Jun 18, 2014
    justy, catly, Esther12 and 1 other person like this.
  4. N.A.Wright

    N.A.Wright Guest

    Messages:
    106
    Likes:
    127
    There are major differences between the UK and the US as far as the drivers of patient representation and participation are concerned - a function not only of the different health structures but also the whole conceptual basis of what participation is for or why it is necessary. In the US the main driver seems to be the right of the individual citizen to hold the Government and the organisations funded by Government, to account; in the UK a far more tenuous set of values is in operation which in turn produces a poorly focussed and uncertain set of responses. At this stage I'd simply applaud the MRC for at least opening this conference up in the way it has.

    We do need to recognise that researchers as a whole in the UK are likely to be somewhat wary of ME/CFS patients as a group and we need to make efforts to demonstrate willingness to cooperate with the terms of broad research even when some of that research is not what we would see as a priority, or even desirable. Whatever the rights and wrongs of the PACE and associated studies and the opposition to them, the fallout undoubtedly unnerved sections of UK medical research beyond just the psychologists and psychiatrists. Patient attitudes matter where researchers can choose where and upon what they work - IMO Jonanthan Edward's comments here are very pertinent.

    We may all be convinced that as long as the right research is funded, patients will back it all the way, but from the researcher persective, the prospect of having legal challenge to a study because it doesn't fit someone's view on what is legitimate is a serious concern given the historical precendent. The UK research community is not large and perceptions of 'attack' on one section can be seen as an attack on all. Patient involvement in research makes good science as well empowering the people in whose direct interest the research is intended to work but in the context f the Research Collaborative ME/CFS patients will need to demonstrate a continuing ability to be supportive partners if the available opportunities are to exploited. Exercise of citizen rights is also important but that has to be pursued in other venues and directed at other audiences.
     
    catly, Firestormm and Sasha like this.
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    8,448
    Likes:
    15,013
    Amersfoort, Netherlands
    The only researchers who should be unnerved by the patient reaction are the ones who are engaging in misleading, absurd, and even fraudulent research and representations of that research.

    The alternative to disputing those studies, and seeking more information, would be to smile and nod when told to exercise more and that we should avoid biological medical interventions. I don't find that to be an acceptable option.

    Additionally, ME/CFS patients have been very supportive of research conducted in an honest and thoughtful manner, even when the results are negative.

    A false portrayal of ME/CFS patients by a few fraudsters should not silence us when they publish dishonest information.
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    5,798
    Likes:
    7,674
    catly and Wildcat like this.
  7. seanpaul

    seanpaul

    Messages:
    43
    Likes:
    79
    there is no reason at all why proceedings should not be made public - I salute your efforts and wish you success
     
    catly, WillowTree and Min like this.
  8. N.A.Wright

    N.A.Wright Guest

    Messages:
    106
    Likes:
    127
    We shouldn't confuse assertiveness, which is called for in any adovocacy context, and aggressiveness, most particularly perceptions of aggressiveness. One of the points I sought to make above was that there is a cultural difference between patient participation and representation in the US and that in the UK. I don't know what the situation is in the Netherlands where perhaps a more demonstrative stance is both warranted and is culturally acceptable. In the UK however, we have a small research community which has developed a degree of shared defensiveness - prompted very much by the actions of extreme animal rightists over several decades. To suggest that any researchers should be unnerved by a patient group, just does not play well; it's not a matter of rolling over and accepting what the white coats decree, it's a matter of demonstrating positive involvement. The alternative is a self fulfilling chilling effect on ME research and on the condition being taken seriously.
     
    catly and Min like this.
  9. N.A.Wright

    N.A.Wright Guest

    Messages:
    106
    Likes:
    127
    I think you are underestimating issues of budget allocation and bureacratic conservatism. Effecting change in organisations is often extremenly difficult, simply changing the way money is allocated for very small budgets can require major managerial effort. The NHS has a whole raft of policies about patient particiation http://www.england.nhs.uk/ourwork/patients/, I had a conversation ealier this week with someone who is actually employed to make these policies happen at ground level - in one case it took over a year to make a minor change in recruitment practice and in another case a change to online information, recognised as desirable over five years ago, still hasn't happend because of legal concerns and what might be seen as managerial myopia.

    In the case of the MRC things are likely even more detached than in the NHS because historically the MRC dealt only with researchers - end benficiaries (patients) were not even in the frame. The key thing now is that the MRC and the researchers they work with, see that there are benefits in working with patients, and that the costs - both fiancial and organisational that are associated with bringing patients into the process, are understood to be essential investments not extraneous expenditures.
     
    Leopardtail and Firestormm like this.
  10. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    Details of the Professional conference programme as promised:

    Still a work in progress and the gaps will be populated after peer review of submitted abstracts. Closing date for applications is 4 July 2014.

    Note: Patient programme can be found here: http://www.meassociation.org.uk/wp-content/uploads/cmrc-conf-patient-session-full-programme.pdf
     
    catly and Sasha like this.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,909
    Likes:
    2,231
    Midwest, USA
    If someone can tell me where this is taking place, I will put it on the calendar.
     
  12. Sasha

    Sasha Fine, thank you

    Messages:
    11,101
    Likes:
    13,181
    UK
    Bristol, UK - thanks!
     
    Little Bluestem likes this.
  13. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,989
    Cornwall England
    26 June 2014

    See: http://www.actionforme.org.uk/get-i...ted-activity/uk-cfsme-research-collaborative/


    I am not sure it is true that results cannot be disclosed or studies discussed publicly and that to do so would prevent publication. I mean what about Lipkin and his CDC Broadcast last September, or Montoya for that matter and his announcements at IACFS/ME in San Francisco?

    One could argue that as we have yet to see either paper(s) this is a mute point, but more and more conferences are now allowing patient participation at which preliminary discussions and announcements are held...

    Although some conferences e.g. Invest in ME do maintain a separate and private event for researchers, this doesn't appear to prevent the researchers discussing matters with the patient body...

    I don't buy into this I am afraid not completely as an argument for non-patient involvement. I am though interested to learn how they might be able to get patients involved with the planning of research itself.

    The workshop sounds interesting from that perspective - though if I was there I'd want to be hearing much more from the researchers. But that's just me.

    Thanks @Simon for agreeing to do this and I look forward to reading your report. Looks like you are the 'only patient in the village' :)
     
    Last edited: Jun 26, 2014
  14. Sasha

    Sasha Fine, thank you

    Messages:
    11,101
    Likes:
    13,181
    UK
    That's fantastic that you'll be doing this, @Simon - thank you! :balloons:

    That's a bit of an odd question about how many questionnaires PWME can complete. As long as we can fill them in at our own pace, I'd have said "any number".

    I think it's important not to underestimate what patients are willing to do in order to further research.
     
    justy, catly and Simon like this.
  15. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,035
    Likes:
    647
    England
    I think this transparency is vital, it both allows us to understand decisions made that have vital relevance to our lives and futures, and also makes people accountable. We should not be having decisions made in secrete in darkened rooms that both spend public money and affect the lives of the public.

    We should also have all documents presented to and considered in made freely downloadable for scrutiny.
     
    catly and Valentijn like this.
  16. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,035
    Likes:
    647
    England
    Change does not have to happen overnight, it just needs to happen & any move in the right direction is worth supporting.
     
  17. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,035
    Likes:
    647
    England
    Julia Newton and her colleagues describe ME patients as more willing, more appreciative, and more rewarding - hence I agree with the above completely.
     
    MeSci, catly, Wildcat and 3 others like this.
  18. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,035
    Likes:
    647
    England
    I understand that point you are making here, but would you not agree that if patients are able to challenge bad research before it is performed, that:
    1. the likelihood of accidental bad research is much lower (e.g. taking measurements during PEM not before it)
    2. the relationship between patients and researchers will improve very rapidly when good quality, well considered research is done.
    3. that labelling physiological researchers as 'pressure groups' and 'militant factions' by the psychiatric profession is far more off putting
    Point three above causes me to consider it questionable whether I would wish to dedicate three years of my life to research only to have it ignored due to a politically active and overly powerful faction within medicine. I would counter argue the behaviour of a militant faction within the psychiatric profession are a larger barrier to good research both biophysical and psychological. I know they are the primary factor that puts me off research not patients. I question whether I would get fair access to publication and whether their conduct would cause my research (irrespective of findings) to receive fair consideration pre- or post- publication. I have seen letters written by that medical faction in lancet/BMJ that are personal and bordering on offensive.
     
    catly, Min, Wildcat and 1 other person like this.
  19. altered beast

    altered beast

    Messages:
    7
    Likes:
    8
    Is anyone on here attending the patient/reseacher sessions of this conference?
     
  20. Leopardtail

    Leopardtail Senior Member

    Messages:
    1,035
    Likes:
    647
    England
    yes, I will be there.....
     
    justy, Little Bluestem, catly and 3 others like this.

See more popular forum discussions.

Share This Page